Thursday, September 18, 2008

Part of Your World

This is a guest post by my husband Chris, who in addition to being Ben's dad spends weekday afternoons as Ben's 1:1 aide. I asked him to write up this story so I could share with you.

Ben's time at his Montessori school includes an awful lot of what parents of spectrum kids most fear: unstructured outdoor free play. One-and-a-half hours at lunch, and another one-and-a-half hours (or more) at the beginning of aftercare.

He's been doing fairly well considering the sheer amount of time he has to navigate each day, if you're measuring "well" by the decreasing frequency with which he physically assaults one of his classmates in response to provocations both real and unintentional.

But he hasn't been playing much with others.

He'll sit by himself, read a book by himself, or push a trike around the yard by himself (without using the pedals, of course). In the past week he's latched onto a small multicolored basketball, and has been making half-hearted attempts at dribbling. When he joins other kids on the small carpet to play with Legos or plastic zoo animals, he's typically playing in parallel.

On some days the boys try to recruit me for a game of Jail, but Ben's attempts to help me escape or elude capture soon cross over into actual anxiety about why won't these kids let go of my Daddy. So we have to break up the game before much time has passed.

Back in the spring and summer Ben spent playtime with a younger mix of kids, who were more likely to start up a simple game of running and shouting. Ben still enjoys this kind of play, where enthusiasm and volume are more important than roles or storyline.

But this is Pre-K and older. His same-age peers are trying to act a little cooler, a little more mature.

I have to admit I've come home most nights feeling dejected. I had thought the point of paying for the Montessori school was to enable Ben to build on his social skills. To keep him in a community of typical kids he already knows and likes. If he's just going to stick to himself why are we spending all this money?

Then The Little Mermaid happened.

Ben had known the story of course, from the Read-Along Book and CD. And we'd picked up another storybook version after he'd sat for a long time in a bookstore looking at it. But he'd never seen the movie.

So after learning Ariel's song "Part Of Your World" from a Disney Sing-A-Long video, and seeing two more songs ("Under the Sea" and "Kiss the Girl") on another video, Ben spoke up very sweetly this weekend "Mommy, you know what I wish? That we had the Little Mermaid movie."

Mommy, ever the advance planner, pulled the DVD out of a closet and made his wish come true.

So, he sat and watched the entire movie, adding his own narration from the Read-Along story he'd memorized, at all the right spots in between the dialogue.

WELL, you can imagine that this created an opportunity for some small talk on the playground Monday afternoon.

As the kids ate their afterschool snack I encouraged Ben and a couple of girls at the table to share their favorite parts of The Little Mermaid. (We'd had this conversation before, but now Ben had actually seen the movie himself.)

The next day at lunchtime (as reported to me by Ben's early-afternoon aide), Ben and his friend Madeleine struck up the conversation again (without adult prompting). Apparently Madeleine knew the movie well enough that she knew all of Ariel's lines.

Before long the two of them began ACTING OUT THE STORY TOGETHER. And by the end of lunch two or three more kids had joined in.

This is exactly the kind of play we do at home as a family, and Ben was clearly thrilled by it. When I arrived at school he kept asking me where Madeleine was (for a portion of the afternoon the class is broken up into two groups). And heading out to aftercare he followed her in line, starting to tell the story as they walked. He squeezed in next to her on a bench that was already quite full, asking her to sing "Part Of Your World" with him, although she wasn't in the mood.

Wednesday at lunch he and Madeleine were at it again, singing, running, jumping, and telling the story of The Little Mermaid. Another boy joined in who had played the day before, but he (as Ursula, the villain) and Ben (as Eric) got a little too method in the big fight scene, and had to be pulled apart.

Today at lunch he asked Madeleine again to play The Little Mermaid. She said no at first, but when he asked again five minutes later she agreed. And with her and two other kids they played for half an hour.

When I arrived the teachers were effusive about how well he had played with everyone. To this point I still hadn't witnessed it myself.

But in aftercare I discovered that Mads had been talking up Ben's playacting skills with one of the older girls. The two of them ran over to where Ben was eating his snack.

"Ben!" shouted Madeleine. "When you're done eating, will you come play The Little Mermaid with us?"

Ben just squinted at her and offered his all-purpose non-committal expression. "Well..."

"You HAVE to help us! You have to give the directions!"

He agreed, and continued to eat. A few minutes later the girls ran back to where we sat.

"Are you done yet?" They shouted in unison.

"Nope," said Ben.

"Aw, shucks!" They echoed each other.

While Ben asked me what "Aw, shucks!" meant, my brain was busy trying to process the fact that these two girls were WAITING for Ben to come play with them--a type of play that he LOVES. He wasn't simply being included; he was ESSENTIAL.

Ben finished his snack, impatiently zipped up his backpack, and joined Madeleine and the older girl for a rousing performance of The Little Mermaid. Both girls assumed the role of Ariel, and Ben assumed the roles of everyone else: Eric, Sir Grimsby, Flounder, Scuttle, Sebastian, Ursula, King Triton, and the narrator.

At various points in the story where Ariel has no lines, Ben could be observed walking away from the girls, describing (for example) the fury of the storm that tosses Eric overboard, with a flurry of wild gesticulations and hissed consonants. But then he would run back to them to prompt them to speak the next line of dialogue.

At times the girls were distracted by a teacher who was blowing bubbles for all the kids to chase, but they kept coming back and asking Ben to continue, even after he had given up on them and started telling the story of Finding Nemo to himself.

The big finale was interrupted by a group painting activity, so I didn't see Ben attempt the closing kiss--although I did see him engineer a VERY near-miss with the older girl during the moment in the story that accompanies the song "Kiss the Girl". (Close enough that I think she started getting nervous.)

It's likely Mads and the other kids will tire of acting out this particular story before Ben does. So despite my ambivalence towards the Disney media empire, I do now believe that Ben's social development will be aided by his familiarity with other stories favored by his peers (especially, perhaps, the girls).

Tonight as we were leaving I asked Madeleine what her other favorite movies were.

"Snow White," she said. "And Sleeping Beauty."

Done and done.

Sunday, September 14, 2008

David Foster Wallace's Youngest Fan

Yesterday, when I heard that author David Foster Wallace had died and I felt a pang of shock and sadness.

I will leave the eulogies to more talented writers and those who were closer to him and his work than I. But I loved his writing, even when it baffled me, which it often did.

His novel Infinite Jest is the most incredible, funny, challenging, maddening and brilliant book I've ever read.

When my friend Anne emailed me today to find out if I head heard the news, she noted that, "...having read Infinite Jest, it was possible we have spent as much time with David Foster Wallace as with some of our close acquaintances." (It is 981 pages long with another 90 or so pages of hyper-detailed footnotes.)

But my favorite DFW book is the collection of essays, A Supposedly Funny Thing I'll Never Do Again.

When I read it, I felt like I had discovered the smartest person in the world; one who could start a sentence with "Existentiovoyeristic conundra notwithstanding..." and at the same time communicate compelling points with ease and clarity, and be staggeringly funny.

The main reason that I'm writing about Foster Wallace's passing here is that for a period of time, starting before he turned two, Ben was also obsessed with this book.

For some reason (was it the book's bright yellow cover, some bit of rhythm in the title?) he always pulled it down from the shelf and demanded - with the tiny bit of language that he had - that I read the title and the cover blurb over and over again.

At the time, Chris posted a short video of this (complete with his own DFW-derived footnote) and even if you've never heard of David Foster Wallace, I encourage you to watch it if you are interested in Hyperlexia.

The video captures the unusual intensity and concentration that a hyperlexic child has for the printed word and language. At the time, we were just beginning to wonder if Ben's development was "normal," and if we should be concerned. We were still more than a year away from our first assessment.

This is the stage of hyperlexia where we, like many parents, saw the quirky gifts, but weren't really seeing the deficits clearly yet - the social difficulties, the need for order and predictability, the sensory challenges.

I love that we've captured this moment in Ben's development: how intent he was on decoding the mystery of the sounds and the letters and learning how they all fit together. You can almost see the wheels turning.

I had always had an idea that I was going to track down David Foster Wallace's email and send this video to him, too. I thought he might appreciate it.

Unfortunately I'm too late.

Rest in peace.

Monday, September 8, 2008

Stained Glass

We were in Minnesota visiting my family a few weeks ago, enjoying the nicely balmy midwestern-style weather, a mutual love-fest between Ben and grandma and grandpa, swimming, corn-on-the-cob and a surprising lack of mosquitos.

We got to spend time with my cousin Jay and his wife Therese and their newly adopted, lovely baby boy, Joshua.

We talked about what parents talk about - work/life balance, hopes and dreams for the future, the joys of the present, the dilemmas of finding good childcare, the hazy exhaustion.

In talking about our various journeys of parenthood, both of which are slightly off the beaten track, we agreed that with special needs children and adopted children, you discover that the child you wanted most is exactly the one you got.

Therese shared with me this wonderful, uncredited piece of writing and I wanted to share it with you, too.

Your kids will challenge you, bring you to tears,

crack you up and make you forget what you urgently had to do.

They’ll shatter the life you knew into a million pieces.

Then they will put it back together, like a stained glassed window,

into something infinitely more complicated and beautiful.

Saturday, September 6, 2008

Boy seeking play date

Wanted:

Friend for regular playdates. Boy or girl between the ages of 3 and 6.

The ideal candidate will find running, shouting and falling down over and over again incredibly funny.

You must be someone who loves Thomas trains, will allow me to play with your trains, but must not touch any of mine. EVER.

Must be able to act out the following stories from memory:

Chrysanthemum by Kevin Henkes

Blueberries for Sal by Robert McCloskey

Star Wars read-along book accompanying 45 RPM record from 1977

The nursery scene of Disney's Peter Pan

The Flying Kipper, from the Thomas the Tank Engine canon

Miss Nelson is Missing, Miss Nelson is Back and Miss Nelson Has Field Day by Harry Alard

A variety of Backyardigans episodes

Accents and funny voices a plus.

Must be willing to follow direction, learn blocking and switch parts at a moment notice. Must enjoy recreating poses from book illustrations on cue.

Looking for someone who will follow orders, and not be offended if I decide to ignore you and go off by myself.

Extensive knowledge of the works of Ezra Jack Keats desirable.

Friday, September 5, 2008

What is the meaning of this?

If you read anything about Hyperlexia, one of the first things you will learn is that children who are hyperlexic start out with reading skills that are far, far more advanced than their comprehension skills.

While Ben's decoding-to-comprehension ratio has been gradually evening out, I'm noticing something in the last few weeks that tells me that he is actively trying to comprehend.

He's constantly asking me what words mean.

I'm used to him just reading and reading and reading, knowing that he can't possibly UNDERSTAND what "Resource and Sagacity" means (heck, I don't) even though he can sound out the words.

And he never seemed to mind that he was saying the words without understanding the meaning. The exercise of reading aloud seemed to be, in part, about enjoying the sound of the words and the process of putting the sounds together to make words, like playing music rather than communicating.

Now he'll stop and ask me, for example, in the middle of reading his Star Wars book, "What is proton?" "What are torpedoes?"

He'll also just ask me the meaning of words out of the blue, as if he's been reciting a story in his head and suddenly realizes he wants to know the meaning of this word he's been saying for months.

Sometimes I know what story he's thinking of and sometimes I have no idea.

Here are a few random examples just from the last few days:

What's a shrub?

What's destroyed?

What's jealous?

What's exhaust?

What's a meerkat?

What's solemn?

What is orbiting?

What is berserk?

and, my favorite:

"Mommy, what's obe-live-VEE-on?"

"What?"

"Obe-live-VEE-on." (points to song lyrics)

"Oh - that's oblivion. It means...it's like...um...disappearing up into the sky."

"Oh. Oblivion."

And thus, slowly go the characteristics of Hyperlexia, fading into oblivion.

Fall Forward

It feels like a long time since I've sat down and written anything.

It's not because I have nothing to report - quite the contrary. Since I last posted, we've gone on a summer vacation (great), Ben has started a new school year (mixed), and I've been caught up in a haze of work and drama of the presidential campaign (not so good).

So today, I've escaped to a local Peet's Coffee to attempt to catch up, blog-wise. It's sort of a 21st century version of "A Room of One's Own," except for all the other people and the sound of the espresso machine.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

I was facing the start of this school year with trepidation bordering on anxiety.

Ben goes to two schools: a public special-ed preschool in the a.m. and then a private montessori preschool in the afternoon. He rides a bus (yes, a short bus) from our house in the morning and from one to the other. While the school situation wasn't changing, just about everything else was:

Two new teachers in the morning
Two new teachers in the afternoon
Two new bus drivers
New classmates
New aftercare providers

Ben can be very rigid when it comes to small things, but he's actually very adaptable when it comes to bigger changes, so he's done quite well.

The second day of school, I'm told, he was regaling his morning teachers with the one knock-knock joke he knows at the lunch table, which tells me he feels comfortable enough to work the crowd.

But for us, there are a few wrinkles in the school year that aren't exactly ironed out.

First, the OUSD Department of Transportation experienced some glitch with their computer system (that's the explanation, anyway) such that there is no bus service or incorrect bus service for hundreds of children, including Ben. This means that Chris has to bring him from one school to another every day until this gets resolved.

Luckily for everyone, Chris isn't working right now. I'm not sure what families who have two working parents are doing.

There's another reason that we're lucky that Chris isn't working. He's serving as Ben's 1:1 aide at the Montessori school every afternoon.

Last year, Ben was in a class with ten students and two teachers. If he had an incident or needed extra attention, it was easy for one teacher to take him for a walk or work with him individually.

His new class has 18 children and two teachers: not so conducive to individual attention.

The behavior challenges that Ben had towards the end of the summer left the school feeling that Ben needs an extra adult on hand, and at the moment, they're probably right.

While the school has provided one extra staff person for a few hours during the day to shadow him, she isn't available after 2, so at that point, Chris goes over and acts as a sort of ad hoc volunteer teaching assistant for a few hours.

Will we get a 1:1 aide? Maybe. Can we afford it? Not sure. What will happen when Chris goes back to work? No idea.

We don't want to pull him out of the Montessori program because, despite the expense and the less-than-ideal staffing ratio, he has an amazing opportunity there to interact with typical peers, which has been important for him over the past year.

So we're facing what so many parents of special needs children face: pay out of pocket for services that are good for your kid and risk being on the financial brink, or keep your kid at home and face the opportunity cost of lost income, and the lost opportunity of early intervention.

What about you, dear readers? How has your school year started out? How do you fit the pieces of the school-childcare-work puzzle together?

And how do I hire a private livery service for a 4-and-a-half year old?